When someone has been particularly selfless and has gone the extra mile, I firmly believe in honouring them as a way of saying “thank you”. I’d like to use this post as an opportunity to do just that.
Four different audiologists later and nearly 6 weeks into my journey, I found myself feeling incredibly alone. Other than the odd appointment to discuss hearing aids, we had no support from anyone familiar with anything to do with the deaf. We had not been referred to any form of support structure and this journey ahead seemed like an impossibly daunting task. A family friend, in a kind attempt to show us compassion went onto the internet and printed out a few pages that she had found. She placed them in a plastic folder and dropped them off at our new home where they landed up on my bed side table. This had happened without my knowledge. On one particularly low evening, I mentioned to my husband that I’d never felt that alone before, and would do anything for just a little support, but where to start looking? Feeling disillusioned by my circumstances, I decided to best escape reality by having an early night. Getting into bed, I noticed a little green folder on the table, and decided to page through it. Our friend had discovered a South African early intervention programme, called HI HOPES, which supports families of deaf and hard of hearing babies, and had printed out a few information pages about them. Could this possibly be the answer to my prayer for support? I came across a contact number. It was the mobile number for the director. It was now nearly 8pm, and I so wanted to investigate this further, but also didn’t want to bother anyone after hours, let alone the director of all people. I was too desperate to wait, so sent a text message to the number, just asking for a contact person in our area. Within a few minutes I received a reply from the director inviting me to call her then and there. I did, and that was one of the best decisions that I’ve made on this journey thus far. On the other end of the line was an expert on deafness. But not one that thought too much of herself to connect with a broken-hearted mom. She listen empathetically to my story, explained that this was the very reason that she was born and offered to be my 24 hour call line. The call ended, and something in me had changed. I had a spark of hope. I rushed over to my husband to tell him about what had just happened and for the first time in a while, had a huge smile on my face. I had support! We were no longer alone.
The next day, I was referred to the coordinator of HI HOPES for our area, and subsequently had a “parent advisor” assigned to our family. This is a person who has been trained by HI HOPES to be an interventionist in the lives of a family of a deaf/ hard of hearing child. They do fortnightly visits to your home and provide unbiased information about all your options as a parent. You are also given ideas and “homework” that provide the tools as well some direction in building communication skills and language with your child. It’s so comforting to have someone there to guide and prepare you for your life long journey as a parent of a deaf child. Their services are completely free of charge, and although they are based in Johannesburg, they are reaching out to many other areas of our country, such as the area where we live. Having this service and building a relationship with the interventionist is an incredible blessing that really makes a difference to the lives of families of deaf children. Our interventionist is Naomi. She has been incredibly kind and encouraging, and it has been wonderful to get to know her and have her support over the past few months.
I think that one of the reasons for their success in making you feel truly heard and understood as a parent, is the compassion and passion of their leadership. Professor Claudine Storbeck, is the director that was so kind to me on that lonely evening. She is a servant-hearted leader, and I’m yet to meet anyone with as much passion about anything as she has for the deaf and families of the deaf. A real life superhero! I have actually taken her up many times (at very inconvenient hours) on her “24 hour call line” offer, and each time ended the call having had my “hope tank” topped up. I am humbled and honoured to have her walking along side us on this journey.
HI Hopes has gone the extra mile for us. I mentioned before that I needed to travel to Johannesburg for Eden’s ABR test. The audiologist, Sel, from HI HOPES accompanied me to the test. She was a very real presence of calm in an otherwise turbulent day. Although I was on my own with my baby in an unfamiliar city, I felt like I had the support of family, just by her being there. Claudine also met up with me whilst Eden and I were in Johannesburg. Again an unbiased voice of compassion and hope. I am eternally grateful for everything that they have been to us over this time. If supporting families like ours, is something you’d like to consider, HI HOPES is making a real difference. Take a few minutes and look at their website: http://www.hihopes.co.za. A quote that I think applies to this team: “It’s easy to say, ‘It’s not my child, not my community, not my world, not my problem.’ There are then those that see the need and respond. These people are true heroes.”
There have been other amazing people who I’ve crossed paths with which I’ll mention in turn. Our families have been incredibly supportive and we have also felt a presence of Peace and Perfect Love that has been tangible, especially at times when I’ve felt most alone. And I don’t for one moment, consider the relationships that I have made, as coincidence. We have also found an incredibly caring and family centered audiologist/SLT, Julie Cardona. Her sincere empathy and compassion for her clients, sets her apart as a hero of the audiology world.
In honouring my heroes as well as my inspiration, my 3 girls, my desire is to be of support and a voice of hope to other parents out there who may be feeling overwhelmed and alone in a world that they too, were unprepared for.